Category Archives: Loss

Audition Day! Harriet’s Story

by TARJA on FEBRUARY 21, 2017

Submissions are officially closed and LISTEN TO YOUR MOTHER San Francisco is rolling ahead to our auditions! Thank you to everyone who bared a piece of their soul. Each and every story was recognized and appreciated. As always, it was very difficult culling it down to the next level of auditions.

Harriet Heydemann, one of our talented 2016 cast members, shares her audition day experience with us – and how her lucky charm made all the difference.

I went to see Ariela’s gravesite yesterday. Skylawn is about a mile from the Pacific Ocean. From the edge of the cemetery, you can see a sliver of the water. That’s when it’s not foggy.

As soon as I got out of my car, a cold wind grabbed me. Wind and fog – Ariela’s kind of weather. I went back to my car for my sweatshirt and started to climb up the hill to Ariela’s site. I was so teary that I couldn’t find her marker. I saw Chinese names and then Spanish names. Where were the Jewish names? Continue reading →

I never liked Passover when I was a kid. Sedars were long and tedious. We couldn’t eat anything until all of the blessings were said, and all of the commentaries were read in Hebrew and sometimes in both Hebrew and English. My siblings, cousins and I were expected to sit still and be quiet. Dressed in our good clothes. Hands in our laps. It was understood that we were not to embarrass our parents. Tanta Bella and Tanta Hannah and old cousin Joseph were there. And then, there was my grandmother who seemed to have little tolerance for the normal disturbances of children. She commanded my mother with a shrill voice and spoke almost entirely in German, a language none of the children fully understood.

Then I became a parent, and Sedars became a time to get together with family. One year, we all met at my sister Lynn’s house in Connecticut. My brother and his family came from Texas. Gary, Ariela and I flew in from California. The adults told the children that they should conduct the Sedar. The two oldest, my brother’s son, John, and my sister’s son, Aaron, both around twelve years old at the time, took control and delegated the parts to the grown-ups and younger children. They asked my mother to read the four questions, normally the task for the youngest. The boys told anecdotes and gave us their own commentaries from the lessons they learned in their Jewish day schools. Ariela had a simple switch device then. The switch was hooked up to a tape recorder, and they asked Ariela to lead everyone in singing “Dayenu.” It would have been enough. It’s an upbeat melody, almost like a march. That was her favorite song. It was a Sedar to remember.

The last time I went to my sister’s house for Passover was in 2003. About six weeks later, Ariela had surgery on her spine. She never fully recovered. She could no longer eat by mouth. Air travel became difficult. The next year and all years after that, I opted to stay home and conduct the Sedar myself.

The first Sedar in our home took place around our kitchen table with a handful of friends. The number increased over the years as Ariela’s aides and companions became part of our extended family. We usually had upwards of 20 people. Millennials outnumbered boomers. Non-Jews outnumbered Jews.

I started our Sedars explaining the basics of the rituals and the story. I sang the Hebrew songs solo, because no one else knew them. With lots of wine, no one complained about my voice.

I asked everyone to bring a story, a poem, artwork, or a song about slavery, freedom or redemption. One year, Lindsey led us all in singing “This Little Light of Mine,” a song from the underground railroad. Nicole talked about the people of the Baha’i faith who have been persecuted, tortured and imprisoned in Iran since the Islamic Revolution in 1979.

Over the years, Ariela’s communication devices became more sophisticated. But, her devices (computers that generated speech) only spoke English. Days before the holiday, I’d program the prayers in a transliterated Hebrew. We went over the words together trying to reproduce the ancient Hebrew sounds with English letters. Ariela spoke Hebrew with a hi-tech accent. She sat in the middle of our dining room table, surrounded by her friends. She said all of the blessings with her synthesized voice, and everyone answered, “Amen.”

This is our first Passover without Ariela. Gary and I went back to Lynn’s house in Connecticut. A few of Ariela’s friends expressed disappointment, but they understood.

I was glad to be at my sister’s house, away from everything that reminds me Ariela isn’t here. A small group of Lynn’s good friends gathered around her beautiful table. Most could read the Hebrew and say the prayers. They were all familiar with the traditions. My sister, Aaron, now in his thirties, and I sang the old melodies that our mother had taught us. Several others sang along. My sister served real gefilte fish (not the stuff from a jar).

We opened the door for Elijah, symbol of our hope for peace and the end of human suffering, and we were greeted by an icy cold New England wind. I thought about our balmy nights in California and our Sedars there. This is a night meant to be different from all other nights, and in many ways it was.

Ariela’s friends come to see me. I like to think they are my friends, too. But first they were friends with Ariela. They started as her aides, hired for the job. But it was never just a job, and they knew that from the start. In the past week, four of her friends came by, and two sent me emails.

I went to dinner with Kim. We came back to my house and my closet. Kim is my fashionista buddy and was Ariela’s before she was mine. She went through my sweaters and told me I needed to get a few new things for my trip to New York.

That’s good, because I hate shopping by myself. I see a top or a dress and think, “Oh, that would look so cute on Ariela.” Then, I remember.

I used to love buying clothes for Ariela, though she rarely liked what I selected. She loved shopping for herself. I was never sure if she didn’t like my taste, or she just wanted to have some control over her life, or maybe she wanted to tell me she could buy her clothes without me.

I think clothes are all about communication. Ariela liked to make a statement with her outfits. So, it figures that she would want to pick out her own wardrobe. She went in for plaids and stripes and bright colors. I suspect she would have been more flamboyant in her dress if she could have found more things to fit. She wore a size 7 girls. It’s not easy to find trendy clothes in that size. I had a few things tailored for her. But most of the time, shopped in the children’s department and avoided anything that said, “juvenile.” She shopped with friends, like Kim, who knew what was cool and would buy things they liked. She liked Abercrombie’s and Forever 21 and the GAP.

So, now I shop with Kim, because she knows what’s in fashion. And like all of Ariela’s friends, she connects me with all things young, and hip, and springtime, and Ariela.

Last Sunday, The NY Times ran the article “Getting Grief Right.” The title is curious — as if there is a right and wrong way to grieve. There are so few spaces to talk about grief, and our immediate response is to fill that space with something uplifting. Sometimes in the ever-current quest for happiness (Are they playing the “Happy” song again?), we forget that grief is a part of being human. Here’s the comment I posted in the Times.

I don’t know how grief can be delineated in stages or chapters. For me it is amorphous, with many deep and mixed emotions. I go back and forth and around with grief and guilt and relief and anger and despair and longing and love.

My daughter had a rare condition that left her a quadriplegic and non-verbal. She also had a severe seizure disorder. She required care 24/7. I’ve been grieving almost all of her life, ever since I learned she would never live normally. In spite of her disabilities and medical issues, she lived 26 years, far longer and fuller than many experts predicted. Her many accomplishments and strong will made her an inspiration to many. But, I am not consoled by her wonderful life.

Since her death last year, I have donated time and resources to charitable causes in her name. I have travelled and read books and gone to movies that I never had time for before her death. All distractions. Nothing fills the gaping hole in my chest.

We all grieve in our own ways. Judging from the number of people who have responded to Dr. O’Malley’s article and the intensity of their responses, we have a lot to say about a subject many people don’t want to talk about.

Stein’s article in The Atlantic gives readers a peek into home life with a child with significant medical needs. I commented on one of the many issues she addresses in her revealing story — Home is a Medicine Unto Itself. Here’s my reply.

We live in a house in California. We have a lot of storage space and a two car garage. No matter how much we added to our once small cottage, my daughter’s medical equipment and supplies seemed to fill all the available space. And yes, in spite of two health insurance plans (employer sponsored and Medicaid), we paid for a lot out of pocket. As she grew and her ailments multiplied, every room said, ”A person with a disability lives here.” It could be an exercise ball, too large to fit in a closet, a suction device that was always out for immediate use, or her wheelchairs (a good one, an old one for back-up when the good one needed repairs, and a power chair that she was learning to use).

When we bought a van with a lift, it took up one and half spaces in our garage.

When she left the house, she carried her feeding pump and formula, her computer with speech generating software, and a backpack fully loaded with bulky medical supplies and medications to last at least three days in case of an earthquake. When she was in high school, the school nurse insisted she carry a portable oxygen tank in case of seizures. My daughter’s physicians explained to the nurse that the oxygen wasn’t necessary, but the nurse insisted. She would carry the oxygen or not attend school. She was like the snail in the children’s book by Leonni who carried his house on his back. The heavy load added to the complexity of finding and retaining appropriate aides who didn’t sign-up to be Sherpas. Maybe it would have helped to have a relationship with a local nursing school.

My daughter died last year. We gave all of her medical equipment and supplies, books, and clothes to people in need. Closets are empty. If I wanted to live in New York, I’d offer a trade. Thank you for your story.

Today is Ariela’s birthday. She would have been twenty-seven. We always celebrated with a party and presents. I don’t know what she liked better — being the center of attention or getting all of the presents.

When she was in elementary school, we invited her entire class to her parties.

My mother would never let me leave anyone out. Even Evelyn Miller who had cooties. “You’ll invite Evelyn or there won’t be any party,” my mother said. “Remember, you went to her party.”

Nowadays, it’s amazing how many people don’t reciprocate. Even kids who came to Ariela’s parties year after year. The little girl who lived four houses down. The twins in her Girl Scout troop. Maybe those girls didn’t have parties.

One girl in her class always included Ariela. For one birthday, a long white limousine drove everyone to a restaurant atop a skyscraper in San Francisco. I hear that girl moved to New York City. I’m sure she’s building skyscrapers now.

Ariela had lots of bowling parties. Duck pins when we lived in Massachusetts. Ten pins in California. She took friends to the San Francisco aquarium on two birthdays. Another year to the opening of a Harry Potter movie. At twenty-one, she invited her friends to a nightclub. A few years ago, a friend threw her a surprise party. A lot of great parties, just not enough of them.